Label my child – if you must

When I talk to someone I’ve just met about Deane, I don’t use the phrase cerebral palsy. In fact, unless it is important, I don’t even mention that he is disabled. This has led to some awkward situations, but I’m willing to risk that to avoid labelling Deane.

I’m afraid that if I say “My son, who has cerebral palsy, loves music and likes to dance whenever he can,” all that what will be heard is “cerebral palsy.” It is part of my personal campaign to get people to see the person, not the disability, to acknowledge the teenager, not the wheelchair.

But this past week, I realized that there is a time and a place when I appreciate that Deane has that label, that classification. The mainstream media was quick to report the decision by the American Psychiatric Association to eliminate Aspergers as a separate diagnosis.

That issue was part of a larger story about a proposal to combine the three existing types of autism into one single diagnosis: autism spectrum disorder. It would eliminate not only Aspergers as a separate diagnosis but also Pervasive Developmental Delay – Not Otherwise Specified (PDD-NOS), a catch-all diagnosis for those with social and communication delays.

While most specialists and parents welcomed the proposed changes, some parents had been very worried about the implications of their children possibly losing their diagnosis. The fear was that some children would be pushed out from under the umbrella of autism-related disorders.

On the surface, it may seem like a rather dry, academic process redefining a disability, but has implications for access to services, funding, support and other things families with disabled children rely on.

Having a disabled child means being intimately involved with a number of large bureaucracies. The forms are endless – school forms, respite rebates, funding applications, medical insurance and government forms. Each one of these forms asks for your child’s diagnosis. In fact, which forms you fill out depends on your child’s diagnosis.

By the time we brought Deane home from the hospital, at 10 weeks old, he had already been slotted into the bureaucracy. I had people coming to the house explaining where I could turn for support, what funding was available for equipment or alterations to the house, what we were eligible for from the government and where we could look for appropriate schooling. It was all based on Deane’s clearly defined diagnosis.

I can’t imagine how hard it is for people whose children don’t fit into a nice neat little diagnosis box. Large bureaucracies – governments, funding agencies, insurance companies and the health care system – do not do well with ambiguity. I would imagine that not having a clear diagnosis would make every application, every attempt to begin new services and every discussion with day cares or schools a lengthy and frustrating process. Without a diagnosis, their child can be denied services or funding available to other families who have a clearly recognizable disorder.

So far, it appears there were few people excluded by the new autism definition. Those parents who had been so worried must be letting out a great sigh of relief. As much as I resent the labels that are put on people with disabilities, this week reminded me of their hidden value.